Hi Everyone

Just had a look and over my two Allo’s we spent over 110 nights in Glasgow  - amazing what we all do to get through this.

Before the first Allo the folks next door to us asked if we were going on a world cruise (lol) as we had so much luggage. Once we told them about what was happening they said that they would do our grass when we were away.

Happy 8th birthday to her

I spent probably a total of 3-4 months up there over the years......as I often went up for critical appointments plus sometimes shot up when she was feeling down; one evening I grabbed overnight stuff (always had a bag almost at the ready just in case) caught a train and was with her within 2 1/2 hours of her very depressed and tearful phone call (she met me at the station) and she just loved that mum-hug and it made lots of difference. 

Have to count the weekend in Berlin too I guess, meeting Thomas?! 

Hugs xxx

Ps, one of the platform staff at the station got to know me quite well over the years and used to ask how she was doing when I was waiting for the train! Met him again a while back and he was so pleased to know she was doing ok in spite of the continuing problems she has! 

Hugs xxx

Good morning John, how did your meeting go yesterday? I do hope that some of the mist has cleared and you have a better understanding of what the plan is.

You will see your thread was high jacked somewhat when your back was turned, but it’s all part of unpacking the journeys we all go on and gives you a taste of what a SCT rollercoaster can be like.

Hi Mike,

Here's the summary I sent to our kids, so I've just done a cut and paste for this group.........

My second visit to Churchill for a Haematology Clinic today. I saw Robert Danby again, and was pleased to do so. He’s very approachable, and we share a similar sense of humour, which makes the whole business much more agreeable.

Thebig news is that they’re well on the way to identifying a suitable donor. They have some antibody testing to do, which will take a couple of weeks – the donor’s in Germany, which slows things down a bit. Apparently, they use a lot of donors from the German list.

So, keep your fingers crossed for me please (not while driving though!)

If all goes well, I should be able to have the transplant in December/January – the sooner the better as far as I’m concerned!

I’ll go to the Churchill & John Radcliffe for a day of tests (Electrocardiogram, Echocardiogram, lung function, cocktails and canapés). After that, I’ll go in for a week of “conditioning therapy”, based on Fludarabine, Melphalan, and the antibody Alemtuzumab (I know, but some people have asked!). They pump all this and other stuff into a Powerpicc catheter inserted above the elbow, which carries a line into a main vein near the heart (they make it sound so easy!)..

The transplant’s a bit of an anti-climax, then the fun starts, as the immune system starts to re-grow. More of this in a later bulletin.

Oh, and today I found out that my blood group is B positive – so that’s what I’m going to do!

Love to you all️

‘B’ Positive - a great tag line to follow John.

This is the same Conditioning I had for my second Allo SCT this is some links to information.

FluMelAlem30 Fludarabine, Melphalan and Alemtuzumab

The ‘Bump’ link for Melphalan and Ice will be essential reading then.

You may find this interesting, well I did as my grandfather was in Second Gordon Highlands and at 7.30am on the 1st of July 1916 - Piper Charlie leapt over the parapet and under a hail of machine gun fire played the regiment’s marching tune on the opening assault of the Battle of the Somme....... I think it’s where I get my fighting spirit from.

But Melphalan is a type of chemo therapy that is actually derived from Nitrogen mustards and is a cytotoxic agent. Amazing what good comes out of bad.

Yes, a very high percentage of donors come from Germany. moomy will have more Info but I am sure that the government covers their time of work to have the cells harvested.

Only 2% of people in the UK are registered as stem cell donors. This compares to 13% in Cyprus, 12% in Israel and 9% in Germany.

Looking like another great day up in Inverness so if the sun is out enjoy the greasy air.

Have a great weekend John.

Thanks - you have a great weekend too

Hi John, a few of the links in my last post were wrong, I have reset them.

Ta very much

PICC lines are easy so don't fret about that for one minute! Good luck with it all! We're cheering for you.